← Return to Pulmonary Embolisms (PE) That Magically Develop - No DVTs

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@lorkish

Hello, I too had massive bilateral pulmonary embolisms (both lungs) without ever having a DVT. The episode completely took me by surprise. Note every patient is different. Due to my age, I am told to stay on Eliquis 2.5mg tablets twice daily for the remainder of my life. Doctors at first did not know why I clotted. I am negative for Factor V and VIII. No history of any blood clots in my family history either. Today, more doctors are thinking the J&J Covid vaccination in 2021 may have caused it (I had it three months prior to clotting.) I will say, I had to change hematologists as the first one put me on the initial dose of Eliquis 5mg twice daily and she kept me on it for a year! I had no idea that the medication was going to cause me issues! Taking the Eliquis at this high dosage for about a year, I developed a lot of muscle and nerve pain in my legs to the point that I needed a walker. I experienced internal tremors in both legs and went to see a neurologist even. I struggled with the pain as it caused me not to be able to sleep even. Tylenol did nothing to help. Finally, I sought out a new hematologist who explained that I should not be on such a high dosage for maintenance! We decided to cut the dosage in half. Within a few months the pains started to subside somewhat. Fast forward to a year later, I was able to walk on my own. No more walker nor cane. No pain in my legs. I now exercise with a recumbent bicycle and feel like my old self pre-clotting. Doctors now tell me not to get any booster shots too. Oh, and I never had Covid ever. Be aware of all medications. Get a hematologist you are comfortable seeing as well. Good luck.

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Replies to "Hello, I too had massive bilateral pulmonary embolisms (both lungs) without ever having a DVT. The..."

Glad you are feeling better and walking again without assistance.
Now I am worried! I have been on 5mg. Eliquis 2x per day for 1.5 years with no sign of reducing. I did get the Covid booster -Pfizer (family doctor recommended).
Getting frustrated with the guess work and blood tests, and no final answer but covid really threw everyone for a loop. Maybe in the future, with more research, there will be better answers. So many unknowns right now.